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Thursday, March 8, 2018

Me, the Mush

I feel mushy.

My joints have sort of felt like mush since Sunday night, and I have stretched my energy to its limit, to the point where I have genuinely worried about physically collapsing and my speech sometimes becomes slurred because I am too exhausted to enunciate and my thoughts feel like they must swim through a sea of molasses to turn into sounds. I also feel like I am scrambling to hold onto all of this love that people have poured out to me over the past two years and I do not yet know how to allow that love to lift me up rather than weigh down on me.

Because of the chronic nature of my illness, even when I am not managing an acute health crisis I am still living in a body that seems way more fragile than the bodies of the people around me. When I woke up on Monday I ran straight to the bathroom and threw up, and given how much I had put myself through on Sunday, I could not even blame my body for its backlash. I gazed into my bloodshot eyes as I washed my hands. The stark paleness of my face took me slightly aback and I mumbled, "I'm sorry," to the mirror, apologizing to myself for demanding so much of someone so weak.

When I returned to my room I discovered a sweet text from a friend I have not seen in a long time, reading, "Hey Rach! Something is wrong with your account - you wrote a comment that didn't make sense on a post from 2013, and you liked and unliked a 2014 photo three times a few minutes ago. It made me miss you more! What is going on at UNC these days?" Normally social media account issues like this are such a headache, and yet this inconvenient incident turned out to be an opportunity to reconnect with a friend I have been missing quite a bit lately. Somehow everything in my life seems to turn back to love, and it is really wonderful but also sometimes leaves me feeling immensely guilty. How can I ever give back all that I have received? How can I ever say "thank you" sincerely or frequently enough?

So this is how today is going to go, I thought as I typed out a reply and placed a Zofran on my tongue. A rebellious body? Probably. Unrelated inconveniences? Perhaps. Undeserved love? Almost certainly.

On Tuesday, after a hectic Sunday and Monday which were packed full of all sorts of activities back-to-back, I decided just to rest. I have never seen my mother as proud of me as she was when I revealed my intentions to take a break to her on Monday night. "That is great!" she said encouragingly, with way more enthusiasm than I had anticipated. This is probably not the reaction most mothers have to their eighteen-year-old daughters saying they have no plans to be productive, I thought, reflecting on all of the familial pressures my peers recount in the couple of minutes before each class starts, sacred moments of commiseration for overworked undergrads. My mom has been gently encouraging me to do less, but I love everything I do and all the people I get to interact with along the way, so I usually fail at this and then call her crying at least once per week because I am too exhausted to do literally anything and am wondering how I am supposed to live my entire life like this.

My sweet cat Brooke, who was not too happy that I was
trying to type out a Spanish literature essay while she was
trying to take a nap on my hand.

In a miraculous deviation from my normal Tuesday routine, which typically involves capitalizing on my day of no classes by scheduling lots of unnecessary activities, I forced myself to stay in my bed even after I woke up, resisting the urge to go somewhere or do something. My cat and I spent quality time chatting about a variety of our favorite topics, including the futility of the cat-versus-dog debate and how ridiculous our puppy Dante can be, as she sprawled out her paws on my comforter, which, to her delight, was gently heated by the morning sun streaming through my windows. What does one do on a rest day? I asked myself, discontent with the idea of cuddling with my cat for hours on end despite how sweet she is. I decided that rest days should involve watching cycle 10 of America's Next Top Model, playing piano until the searing pain in my wrists becomes too much, and writing a Spanish paper. As the day progressed, I realized that I was likely coming down with an infection, but I did not admit any of the symptoms out loud until my mom directly asked me how I was doing later that evening after noticing my agitation. I nonsensically but genuinely thought that if I did not say anything the infection might take a hint and pack its bags.

So here I am, once again fighting something that is quite adept at breaking me down (classic, right after I work up the courage to make a celebratory social media post about not having an infection). At its onset, I remembered that there was the possibility that this was just my severe seasonal allergies, especially since my lungs are doing their fun annual thing where they just stop working and I have to revitalize them with medications that make me shaky and dose me with a pinch of panic. I took Benadryl to test my allergy theory, but when this did not improve my symptoms at all, I was pushed further towards the upsetting realization that my most dreaded moment of the semester had arrived.

As a result, my mom received another teary phone call (my specialty as a daughter) this morning after a doctor's appointment which finally confirmed an infection and left me feeling like we might be starting this cruel cycle all over again. Lots of people have proven themselves to be fully committed to making each day a little less exhausting for me by helping in every way they can, but I seem to be following a sprint-collapse-sprint-collapse pattern rather than adhering to the doctrine of the steady jog. I am thankful for friends and for parents who catch me in their arms without scolding me for my illogical pacing. They are the true saints of this world.

"Two more days," my friend reminded me this morning, putting her arm around my shoulders when she witnessed tears of exhaustion well up in my eyes. "You can do this, my friend. Two more days and then you can rest for a whole week." I think I am more likely to collapse than to rest. Rest implies some sort of choice. It seems as though I could collapse for the entirety of spring break and still feel fatigued, but I was motivated nevertheless by the imposition of a finish line. I loved her for this sweet reminder, and for helping me to think just a little further ahead than pain allows me to unaided. "And don't schedule anything," she snapped. We laughed as I wiped away a few stray tears.

I do not take for granted my ability to go to class this week, even though I am sick and my energy is just barely detectable. As some of you may remember from "Flying Home Early," last year I missed the entire week of classes prior to spring break due to laryngitis, severe allergies, infection, and poor airway function. When I realized that I needed to return to North Carolina immediately, I had to email one of my professors, who had the option to kick me out of his course due to my excessive absences and the participatory nature of the class. I was doing well in his course, and wanted desperately to stay enrolled, but I was too sick to allow this to be a deciding factor in my decision to come home. I already had my plane ticket. I was completely at his mercy. I sent an email begging to remain a part of the course but promising my understanding and respect of his decision regardless.

"I am sorry you are struggling right now," he wrote back quickly, "... rest assured that I will work with you." I cried silent tears of relief reading this email from the New Orleans airport, tiny droplets that soaked into my medical mask and made me cough a bit. Living with a chronic illness means living with so many moments of having to show people how imperfect you are, whether through a humiliating email admitting that your body is failing in every way or curled up with a mask on in an airport terminal with no one sitting closer than five feet away from you. I do not think that having arthritis is a gift in the slightest, but this repetitive experience of having to humble myself and be my most broken in front of people certainly is, even though most of the time I do not appreciate it until long after these embarrassing moments pass. There is nothing more frightening, and there is nothing more human. My body forces me to abandon the illusion that I have it all together. The same condition that traps me frees me to see the very best in people, to view them in their most kind and accommodating and gentle and encouraging moments. Constant physical reminders of my own fragility remind me that my life is a dandelion that could be carried away by the smallest gust of wind at any moment, and so I try to live a little more meaningfully than I might otherwise.

As you might expect, I have been reflecting quite a bit lately on the past year and all that it has entailed. On February 15th of 2017, I submitted a transfer application to UNC Chapel Hill. One part of this process that I only shared with a few of you, and just briefly mentioned in "Coming Home to Carolina", was that my plan was to spend my entire sophomore year studying maternal health as an exchange student in Amsterdam. I applied to my program, met with study abroad advisers, created an academic plan and timeline, submitted a research proposal, and was accepted. I was looking at Dutch dorm rooms and apartments and my family and I were planning when they would visit me in Europe. In the spring of 2017, I was enrolled in advanced public health courses that I did not even have the prerequisites for in preparation for my year abroad. This grand adventure was financially possible thanks to my Tulane scholarship, and I could not have been more excited. My dear roommate covered our dorm room in index cards with Dutch vocabulary. I became a Duolingo Dutch pro and learned many simple sentences. I scoured the Internet for possible church services that I could attend once I was there. Studying abroad for a full academic year was a dream I had been clinging to since middle school, and I was so excited that it was finally becoming a reality.

As you can imagine, by mid-February/early March of 2017, when I was hearing terms like "thirty percent airway function" thrown around despite having two or three nebulizer treatments a day, and was constantly on steroids to try to curb the inflammation taking place all over my body, and was receiving "full allergy cocktails" that included literally every antihistamine the student health center had swallowed at once in an attempt to raise my blood oxygen levels, I knew, even before I could confront the reality, that Amsterdam was off the table. I started screening calls from my study abroad program. I stopped worrying about paperwork and legal hurdles. I was too focused on my lungs and the rest of my collapsing body to fool myself into the notion that I would spend a year traipsing around Europe with all of my new Dutch friends. I was angry with myself for ever thinking I was healthy enough to do this, but I did not even have the energy to stay mad about it because I was so consumed with trying to figure out where I would spend my next three years of undergrad, a decision I thought I had made in 2016. I realized that my college experience would likely involve a lot more staring at tile ceilings and breathing slowly through a medical mask than adventuring through countries and continents in impressive academic pursuits.

This was the hierarchy of my plans for sophomore year: go to the Netherlands, stay at Tulane, and transfer to UNC. Transferring to UNC was my worst-case scenario, my fallback so that I would not end up in a situation in which I would be forced to withdraw from college altogether due to my medical inability to spend another year in New Orleans. Looking back, I am grateful that I had the foresight to think of this back-up option (although I thought of it less than a week before applications were due, which was as inconvenient at it sounds), and even though the whole process of admitting that I might be falling apart in a way that made my life unsalvageable was excruciating, my body was breaking down enough that no one asked me to justify my decision once I revealed in April that I was transferring. A couple of days ago, I was expressing to a Tulane friend whom I adore that I missed our campus, our friendship, and our time together. "Rach," she said tenderly, after a lengthy pause, "You were so sick." I could hear her voice tighten as she became emotional and admitted, "I was so afraid for you." Sometimes I need this reminder that my life in New Orleans was not as perfect as I make it out to be when I am missing the life I was forced to flee. Sometimes misery deserves to be remembered.

I flew home for Easter break just a few days
after announcing that I was transferring to Carolina.
I got home around midnight and sobbed while my
mom hugged me because I did not want to transfer. I
went upstairs to my room and found this sweet gift -
a brand new Carolina pillow, along with a UNC water
bottle and shirt. My parents are the sweetest.

The combination of thinking a lot and having an infection has made me extra mushy this week. Sometimes I can disguise my mushiness for a few hours, like sticking Jell-O in a freezer, but I always thaw eventually, and then I am just as emotionally squishy and liable to become shapeless at the gentle squeeze of a hand as I was before. Sometimes my mushiness makes me weepy and overly sentimental and gives me this simultaneous short-term and existential awareness of the importance of loving one another and of saying out loud or putting down on paper all of the nice things we think about people. Joint pain, nausea, infections, allergies, and fatigue all increase my base level of mushiness. Of course, this is not always outwardly reflected, especially when I am in significant pain. Like any human, I can be distant and irritable and quiet and snappy when I am not feeling well. And then, of course, I feel horrible about myself, for not being a decent human being and for not matching up my actions with my mushy inner state, even though I am also trying hard not to be too mushy. As you can probably tell, this is an exhausting endeavor.

When I am trying to feel less mushy, it helps to freak out over reality television, and it helps to lament that Peter was not the Bachelor (the greatest injustice of our time - Peter, if you're reading this, please marry me). It helps to unnecessarily stress out over my course registration, and it helps to go to the mall and spend an hour picking out a single pair of heels. It helps to talk about concrete, trivial, and pointless things that non-mushy people have the privilege of filling some of their time with, and it helps to re-watch the clip of Kim Kardashian losing her earring in the ocean five times in a row. It helps to blast Beyoncé from my car speakers, and to roll the windows down and sing along even on chilly days. It helps to laugh at Ellen videos while I am nebulizing or sticking needles into my stomach, and it helps to giggle over Vine compilations in the library with my friends at 10 p.m. It helps to spend a solid five minutes chatting with a Target cashier about winged eyeliner and it helps to gossip about the British monarchy with strangers in Barnes & Noble.

Of course, I am perhaps even more grateful for the people who step into a world of mushiness with me, who bravely reveal that they are Jell-O, too. I cling onto these people because they become strongholds I know I can turn to when the whole world is crashing down, people who feel or have felt that same humbling brokenness and unrelenting pain. Over the past two years, I have found myself needing the friendship of other people with chronic illnesses more than ever before. I am only just now discovering that there are elements of this fundamentally flawed state that are innately human enough to encompass people who have had all sorts of tough experiences, not just those who have suffered from physical illnesses. There is much more companionship in the world than I previously imagined. What a beautiful discovery this has been.

I am a hot mess today, with a burning throat and ears that feel like they are submerged in water and lymph nodes that are swollen and an appointment that overwhelmed me and a prescription for antibiotics that makes me want to cry and classes that I do not feel like attending and a body that just wants to lay down and a soul that is still mourning the loss of Amsterdam and New Orleans and stable health. I could try to toughen up, but I think for now I will just stay mushy. My doctor, my nurse, my professors, my parents, and my friends have all met me where I am today, offering kindness and hugs and meals and validation and rides and memes. I hate existing in the mushy space. It makes me feel so broken and honestly, it sometimes makes me feel worthless, like a weak soul existing within a trash body that just cannot seem to understand that it should be redirecting the energy it devotes to attacking itself to fighting the infections that seem to overtake me so easily. But I cannot be anything else today, so I will try again tomorrow to be a bit sturdier, and hopefully that determination will be enough to guide me through.

If you have pulled yourself together today and are putting on a brave face for the world, I commend you. And to the crumbly and the mushy and the melting, and the weepy and the grieving and the fearful, and to all of you who have had to come to the tragic realization that at some point your life as you planned it became unsalvageable, I am with you.

Meet the Author

Rachel Sauls

Welcome! I'm Rachel, a 19-year-old college junior from North Carolina. I blog about juvenile rheumatoid arthritis, life, and all of the intersections between the two. I'm so excited that you're here and I can't wait to get to know you!